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Mattie Lou Koster, 1912-2001 QUESTIONS AND ANSWERS
BEBRF Founder MEDICAL ADVISORY BOARD
Q What are the early symptoms of benign
essential blepharospasm? Botox ® (onabotulinumtoxinA) Mark Hallett, M.D., Chair . . . . . Bethesda, MD Xeomin ® (incobotulinumtoxinA) Brian D. Berman, M.D., M.S. . . . . .Denver, CO A • Dry eyes
Dysport ® (abobotulinumtoxinA) L. Craig Evinger, Ph.D. . . . . . Stony Brook, NY • Light sensitivity Myobloc ® (rimabotulinumtoxinB) Andrew Harrison, M.D. . . . . Minneapolis, MN • Occasional increased blinking, winking or squinting Q What is the procedure for a botulinum toxin
Joseph Jankovic, M.D. . . . . . . .Houston, TX • First symptoms are often noticed when driving treatment and what results should I expect? Laurie J. Ozelius, Ph.D. . . . . . .New York, NYJames R. Patrinely, M.D. . . . . . .Houston, TX Q How do the symptoms of benign essential
A Using a very fine needle, several injections of
botulinum toxin are made around the eyes and Pensacola, FL blepharospasm or oromandibular dystonia directly into muscles that are contracting Alan B. Scott, M.D. . . . . . .San Francisco, CA (Meige) progress? excessively. Positive effects of the treatment for Mark Stacy, M.D. . . . . . . . . .Durham, NC blepharospasm are often seen within about 3 Edwardo Tolosa, M.D. . . . . . Barcelona, Spain A • Increased blinking, squinting,
days of botulinum toxin treatment and the or forced eyelid closure maximum effect is often achieved 2-3 weeks • Eyelids clamp shut and eyebrows pul down DISTRICT DIRECTORS & E-MAIL
after injection. Results from one treatment can • Symptoms may become so severe that the last up to 3 months.
Shelley Goddard, North Central patient becomes functional y blind IL, IN, IA, KY, MI, MN, NE, OH, SD, WI, ND • May develop lower facial problems such as Q Wil botulinum toxin injections make it
grimacing of the mouth possible for me to perform activities as before the onset of blepharospasm/Meige? Peter Bakalor, Western • May develop breathing problems AK, AZ, CA, CO, HI, ID, MT, NV, Q What type of doctor treats blepharospasm?
A It's hard to say. The severity of blepharospasm
NM, OR, UT, WA, WY and the response to botulinum toxin treatment is A Neurologists, neuro-ophthalmologists, ophthal-
not the same for everyone.
mologists and oculoplastic surgeons. However, Barbara Benton, Eastern look for one that treats blepharospasm and has Q Is a botulinum toxin treatment painful?
CT, DE, DC, MA, MD, ME, NH, NJ, NY, experience injecting botulinum toxin.
A There can be momentary pain during each injec-
NC, PA, PR, RI, SC, VT, VA, WV tion. Some are bothered by the pain more than Q What treatments are available for benign
others. EMLA cream (a prescription topical anes- essential blepharospasm? thetic) can be placed on the area approximately Fran Morgan, Southern 1-1/2 hours prior to injection and may be helpful.
AL, AR, FL, GA, KS, LA, MS, MO, OK, TN, TX A • Botulinum toxin injections
A cold compress (or a bag of frozen peas) applied • Medical (drug) treatment to the injection site before the injections may also • Surgery (myectomy) For further information, contact: Q What is botulinum toxin?
Q What is the usual botulinum toxin dosage?
BENIGN ESSENTIAL BLEPHAROSPASM
Eyelid muscle spasms A Botulinum toxin is currently the treatment of
A There is not a standard dose as each patient is
choice for blepharospasm. When injected into different, the types of dystonia vary, and botulinum P. O. Box 12468 • Beaumont, TX 77726-2468, USA muscles, it temporarily weakens them. It is toxin comes in various forms. Most physicians start • Oromandibular Dystonia
(409) 832-0788 • Fax (409) 832-0890 approved for use in over 60 countries. injecting with a low dosage to avoid possible side Blepharospasm patients in the U.S. are effects, increasing it as needed. If the first set of currently injected with the fol owing FDA injections is not satisfactory, the physician should BEBRF is an exempt organization under Section 501(C)(3). Lower facial and jaw spasms approved botulinum toxins: be notified so that he/she can personalize the All donations are tax deductible. See table in next column treatments to suit the individual patient.
Revised December 2013 Q What are the possible side effects of botulinum
A Injections should be covered (to some extent)
A The fol owing drugs are helpful to some when
Q Can benign essential blepharospasm be
by Medicare and private insurance. Through used in conjunction with injections. This is not a their Patient Assistance Programs, Al ergan • Temporary drooping of the eyelids (ptosis) complete list.
(BOTOX®/ onabotulinumtoxinA), Merz Pharma- A • A gene for blepharospasm has NOT been
may partial y obscure vision ceuticals, LLC (Xeomin®/ incobotulinumtoxinA), Brand Name Drug Type • Eye irritation, dry eyes, tearing, or light and Solstice Neurosciences (Myobloc®/ • 5% of patients with blepharospasm have rimabotulinumtoxinB) are dedicated to family members that have facial movement • Occasional blurry or double vision supporting patients who are subject to disorders (95% don't).
• Side effects are usual y mild and short in financial hardships. Some of the Patient • It is possible that there may be some Assistance Programs do not apply to patients "predisposition" for blepharospasm that can be inherited, but it has not been identified.
Q What should I do if I'm not getting good results
on Medicare. For information, contact: from my botulinum toxin treatment? Al ergan (BOTOX®/ onabotulinumtoxinA) Botox Pa- Diphenhydramine Benadryl Q Is it possible for someone with benign essential
blepharospasm to have a spontaneous remission? A Discuss it with your injecting physician. A
tient Assistance Program (uninsured and underinsured) change of sites or dosage may be needed. If • Phone: 1-800-442-6869 from 9am to 8pm (ET), BEBRF does not advocate any particular drug A Complete remissions have been reported but they
he/she is not wil ing to work with you, or if after Monday thru Friday treatment option; therefore, it is strongly sug- are rare. Sometimes temporary remission occurs.
several attempts at solving the issues, you're gested that patients do not change medications stil not satisfied, you may need to go to a without first consulting with their physician.
Q Is benign essential blepharospasm a psychiatric
Merz Pharmaceuticals, LLC (Xeomin®/ Q Are there drugs that may make
Q Is there anything I can do to make the
incobotulinumtoxinA) Patient Assistance Pro- blepharospasm worse? A No! It is a neurological disorder. It is sometimes
misdiagnosed as a psychiatric disorder.
botulinum toxin treatment more effective? gram (uninsured) and Patient Co-Pay Program (co-pay assistance) A There are some drugs belonging to a class cal ed
A Keep a diary with the fol owing information:
Q What can I do to help relieve dry eye
• Phone: 1-888-493-6646 from 8 am to 8 pm "dopamine receptor blocking agents" (DRBAs) (ET), Monday thru Friday that may aggravate blepharospasm and lower •Number of units • Online for Patient Co-Pay Program only: facial and jaw spasms.
A It may take some experimenting to find out
•When it kicked in Q Wil my insurance company pay for
what works for you.
• Artificial tears Solstice Neurosciences (Myobloc®/ myectomy surgery? •How long it lasted • Moisturizing gels or ointments rimabotulinumtoxinB) Patient Reimbursement Communicate honestly with your doctor.
• Warm or cold compresses on the eyes Program (financial hardship) A Before proceeding with this treatment option,
check with your insurance company to be sure that • Fish oil or flaxseed oil supplements Q What are some reasons for having unsuccessful
• Phone: 1-888-461-2255, 9am to 6pm (ET), they wil pay for it. If not covered by insurance, the results from botulinum toxin injections? Monday thru Friday ful out-of-pocket cost for a myectomy may be sur- • Dr. Soparkar's video under "Dry Eyes and A • Incorrect reconstitution of the toxin
Blepharospasm" at prisingly high and may vary from facility to facility.
Q What are some things you can do to relieve the
• Insufficient dosage Q Do any drugs help benign essential
symptoms of benign essential Q I need to apply for disability. What should I do?
• Injection site selection • Injection technique A Drugs used to treat benign essential
A BEBRF has a packet of material available at no
• Apraxia of eyelid opening (inability to keep blepharospasm require a prescription and A • Wear sunglasses (type that wrap around to cut
charge for those patients who are considering eyelid open in absence of spasms) physician supervision. It requires trial and error to filing for Disability under the Social Security Act.
Q Can I develop antibodies from botulinum toxin
find a drug that helps. Some of these drugs may • Wear a hat with a brim This packet does not include disability have severe side effects, may lose effectiveness • Sit facing away from windows application forms. These forms may be over time, and may be addictive. When stopping • Wear tinted lenses obtained directly from Social Security or fil ed A As a rule, patients who receive treatment only
these drugs, under a doctor's supervision, they • Place warm or cold compresses on the eyes for blepharospasm do not develop antibodies.
must be tapered off and not stopped abruptly.
• Use sensory tricks (talk, sing or hum, touch Q Is botulinum toxin treatment covered by Medicare
Q What are the names of drugs that may help
temple or forehead) and medical insurance? benign essential blepharospasm? • Concentrate on a hobby or non-stressful activity

Source: http://www.blepharospasm.org/blepharospasm-QandA.pdf